As many of you will know, the Welfare Reform Bill returns to the House of Commons on Weds, Feb 1st. Ministers have assured us that they will overturn all of the modest amendments we've fought so very hard to achieve. They will do this by using the archaic and undemocratic processes of financial privilege and the Parliament Act. All we can do at this stage is appeal to the consciences of our constituency MP's. Ask them to look very carefully at the amendments and if you wish to personalise the template letter explain to your MP how you as their constituent will be affected by the WRB.

We have until wednesday to persuade those MP's who have heard our arguments for many, many months that we're not asking for the world, we're not seeking to wreck their bill, we just need the bill to be safe. We understand how exhausted everyone is, but this is vital if we are to stop all our hard work from being undone at the brush of an arrogant pen. Please take action now!

PS: Sorry for the formatting. It turns out that two spoonies, with one functioning laptop and no functioning body parts or brains find it a tad tricky to format properly!

Friday, 27 January 2012

So, as you may have heard, the welfare reform bill will go back to the Commons on Wednesday 1st Feb. That's just one day after the third and final reading of the bill in the Lords.

We are all beyond exhausted. Many of us have made ourselves terribly unwell as we fought the worst aspects of the bill. It seems a cruelty to have to prepare for the commons so quickly, but in a fight that has been unpleasant and cruel all the way through, we should expect no less.

It means that spartaci across the internet must summon up a few more ounces of effort for a little while longer.

Since the Responsible Reform report was launched, we now have a Facebook page and a website. People with their own ideas and plans can join the groups and help with many projects - from going through the new PIP thresholds to writing emails. Do take a look if you have some energy to help.

Today, I'm working on a template email that the wonderful people at Church Poverty Action are designing for us. You will simply have to put in your postcode and a letter tailored to your own particular MP will appear. If you can personalise it with your own experiences of ESA or PIP, all the better, but I should have the template for you to use very soon.

In the meantime, it would be very helpful indeed if you wrote to your local paper. They usually have an email address you can use to send letters to the editor. If you feel able to call up and see if they would like a short article, all the better, but many people don't yet know what the welfare reform bill will mean to them, so something very simple pointing out the changes and urging people to contact their MP would be a good start.

Local press have more impact than we might think. MPs worry when they see their local papers full of objections to a particular policy. Their first responsibility is to their constituents and if majorities are tight, pressure can have more effect than in a national paper.

We have a network now that covers most of the country, so let's see how many letters we can get published before next week.

You may have noticed that Scope have joined forces with 38 Degrees to produce an email campaign asking MPs not to use parliamentary privilege to override the amendments to the bill. If you are on their mailing list, please do take a moment to join the action.

Finally, today, a letter to the Guardian from 50 LibDem candidates urges their MPs to let the amendments stand too. We are no longer alone and even the mainstream press are putting pressure on parliamentarians that simply wasn't there a few weeks ago.

We might be exhausted, we might feel that we cannot go on, but this was always going to be a battle we would have to fight to the wire. The very fact we are fighting for amendments at all is a miracle. Good luck Spartaci!! Not long now and every last shred of effort you can find might make the difference.

Thursday, 26 January 2012

How surreal have things become when Nigel Lawson, Geoffrey Howe and Leon Brittain, stalwart Conservative figures from the 80's, are voting against the more brutal elements of a so called 'compassionate conservative' government in 2012?

The distasteful truth is that neither proposals for PIP would have passed, nor would the social fund have been abolished without the Liberal Democrats who voted overwhelmingly with the government.*

When you have a bastion of all our childhoods not even bothering to turn up to vote on whether to keep National Insurance entitlement for profoundly disabled children and staunch conservative figures opposing other issues in their own government's Welfare Reform Bill we must ask ourselves what kind of opiate induced haze has led us to believe this is happening?

Are we hallucinating, is it a result of our exhausted, fevered brains or did Floella Benjamin from Playschool really vote more cruelly than Leon Brittain? I think we need more sleep because currently the idea that the 70's equivalent of Mr Tumbles didn't even bother to turn up to vote to keep benefit entitlement for disabled children is not one our brains can cope with.

Wednesday, 25 January 2012

There is a huge problem in trying to provide an evidence based approach to welfare reform.

Most people just don't want to believe the evidence.

"But if you'd just admit how many people are "trying it on" You'd get further" "If you'd just admit that fraud is much higher than official figures suggest, the genuine could be better provided for" "Why is it so hard to admit there are millions of cheats?"

So here's the problem. No matter how hard they try, no matter how cruel the policies they design, no matter how many rocks they search under or plugholes they peer into, no Government has ever been able to find this mythical army of feckless, workshy sick and disabled people. Well, not until they designed ESA obviously, where they just defined everyone as fit for work and had done with all that silly evidence nonsense.

Official DWP fraud rates stay stubbornly at half of one percent. 0.5%. From Peter Lilley in the 90s to James Purnell on the 00s to Chris Grayling today.

Nonetheless, successive Governments have been determined that they can find a further 4000% of people who are really absolutely fine. 20% is the figure of choice. From the Benefit Integrity Project in the 90s to PIP now, ideologically, politicians, blessed with rude good health and an arrogance born from ignorance have just not been able to bring themselves to believe the numbers suffering from illness or disability in the UK.

I hear it all the time on comments threads "3.2 Million??? Disabled??? Get outta here!! No WAY are there 3.2 million sick or disabled people. (Actually there are 10 million but this causes such pained outrage I try to break them into this figure gently. 3.2 million is just the number claiming DLA)

They forget that we are still largely hidden away, stuck at home or not integrated into their workplaces. They forget, that even when we are, we may not wish to tell people about our disabilities.

Surely, after 20 years you might think governments would have admitted their folly, educated themselves, maybe read a bit of evidence or looked at a few diagnostic figures?

Nope.

For those who find 3.2 million an impossible figure, in fact it is much much higher, but DLA is massively UNDERclaimed. The endless forms and questions and appeals just put most people off. If the benefit was offered genuinely to all those who need it, the amount we pay out to genuine claimants would rocket.

So for those who tell me I'd do better to admit a much higher degree of fraud than official figures suggest, I say to them that the burden of proof is surely on the accuser? Off you go, get out there and find these hoards of cheating fraudsters - because 94% of calls to the benefit fraud hotline turn out to be malicious and almost none are found to be fraudulent.

Or.....(whisper it).... did it ever occur to these Disability Deniers that..... they might just be wrong?

Sunday, 22 January 2012

I think it's important to say "thank you" to all those peers who read and responded to our letters and emails. For months now, we've been sending them evidence, urging them to vote or abstain, trying to recruit them to support our causes and flooding them with last minute, urgent appeals.

I believe we should thank all peers, whether they voted the way we wanted them to or not. They all received thousands of letters and emails and at times, it may have been frustrating. I hope that most realised that it was our desperation to be heard that made us so prolific.

If template letters became irritating, I hope they will remember that many people we fight for simply cannot write their own. Those who are profoundly disabled or those with learning difficulties were still aware of what was being done in their name, but often had no way of expressing it. In our cause, template letters were not a lazy response, but often a vital expression of democracy unseen before.

If some appeals were too emotional or dark, then I hope they will remember that disabilities come in a million packages. Those who are mentally ill or desperate with pain and fear need to use their voices too.

So "Thank You" from me. We had no rule book, no guidance, we were just ordinary people trying to be heard. Thank you for listening, thank you for judging with an open mind, and thank you for giving us just a little hope that there is some way left to change things for the better.

Friday, 20 January 2012

Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.

I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrow energy, but just like the deficit, it has to be paid back.

When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.

After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.

In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.

And then I stopped.

When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.

And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?

I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.

This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???

Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.

They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.

We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.

I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"

I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.

Wednesday, 18 January 2012

Firstly, go back to 5th Januuary. We had no hope. ESA was going to be limited to just one year, DLA was to be abolished and replaced with PIP, which we felt were unfit for purpose and designed without the genuine input of disabled people and their groups. We had no media, no polticians, no voice.

Suddenly, the Mail and the Telegraph and the Mirror were reporting the first hint that all may not be well with the Government's plans for PIP. The story built over the weekend and then, in a blaze of glory and an unprecedented social media campaign, we launched Responsible Reform (The Spartacus Report)

Kaliya and Sarah and I and all the others involved in writing and producing the report could never in a million years have known how successful it would be. A welfare report? Trending on twitter? Getting millions of reads and crashing servers? Miraculous.

All the while we were preparing Responsible Reform we thought it would be ignored. We did it to go on record, to be heard. We did it to ensure there would be a lasting account of the very grave concerns disabled people have about the plans.

Did we think charities, celebrities, academics and medics would support our work so resolutely? Did we think the media would start to push ministers on their plans for reform? And most unlikely, did we think we would end up with an amendment under debate in the House of Lords, requested by us and defended by disabled peers in the House? Never in a million years. But we hoped.

We always knew that the more momentum we could build - and remember this was just momentum created by ordinary people - the more pressure the government would face. We could never, ever have known they would face this much pressure and be forced to move so far.

At the 11th hour - oh but what a shame it couldn't have been earlier - the entire disabled community came together with one voice and that, was too much for even the coalition to ignore.

It is crucial to understand the process of yesterday. Amendments are not binding and as ministers have assured us, will be overturned when the welfare reform bill returns to the House of Commons. They are embarrassing PR blows, little more. What IS binding are the speeches Lord Freud makes just before a vote. It is in that moment that peers get to judge just how far the Government are willing to compromise. If it is far enough, the vote will either be withdrawn or will fail. As I tweeted just before the vote "LISTEN VERY CAREFULLY TO FREUD'S RESPONSE"

As Freud started to speak it was clear that his language was carefully scripted and for once, contained detailed commitments to compromise. At this point, I start to realise that he is moving significantly - I wonder if it will be enough to convince peers.

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.”

Effectively, we got some of all of those things, without an official pause. In fact, we got more. Here are the key points Freud conceded and what they mean.

- A formal consultation on assessments to run for 15 weeks and the key point "regulations which we will lay later this year, will be subject to the full affirmative procedure of both houses."

This is crucial. It means that all the details still missing on assessments, weightings and entitlement criteria will have to be agreed by both the Commons and the Lords before they can go ahead. This is what we most needed and is a huge concession. It means the Government cannot sneak unfit plans through without the agreement of parliament. I can't stress enough what a win this was and how resistant ministers had previously been to the demand.

-Freud went to to promise to test the assessments first, emphasising that "if for any reason [testing is] insufficient we will carry out further testing

-In response to Baroness Browning, Freud promised to "personally look at the impact" PIP would have.

-The Implementation Development group allows disabled people a say in design and implementation. Freud promised not to scrap it in 2013 but to carry it forward. He pledged that "There have been, and there remain, significant opportunities for involvement from disabled people and their organisations, and significant opportunities to influence our proposals to ensure we get them right."

- He promised to test all systems in a "model office environment" before they go live. This means the systems must work before they are used on real people.

- He promised that anyone taking on the contract for assessments must do the same and confirmed that "We expect them to work with disabled people on the design of their processes to improve customer experiencebefore during and after implementation."

Freud goes on to lay out how they will delay the implementation and in effect, trial PIP in a small way, rolling it out very gradually with checks and reviews at every stage. This is very significant and a million miles from a total rollout in April 2013.

He says "As well as getting the whole development process right, I recognise the value in moving away from a big-bang approach to implementation which would see both new claims and reassessments beginning in April 2013" The next section lays out exactly how the implementation of PIP will now work.

"We will limit the number of new claims for personal independence payment to a few thousand per month for the first few months of implementation. This will allow us fully to trial all the processes in a truly live environment.Once we are satisfied that the new processes are working as intended with this reduced number, we will allow all new claims for personal independence payment to enter into the process. We will continue monitoring and reviewing the processes to ensure they are working effectively and appropriately and to see how claimants are finding the experience. We will begin to reassess existing DLA claimants in a co-ordinated way six months after the initial implementation. Again, we will stagger this process. We expect the first stage of reassessment to start in the autumn of 2013, beginning with individuals on a DLA fixed award who will need to renew their claim and those claimants who report a change of circumstances on their existing DLA claims.

At the same time, we intend to conduct a pathfinder trial reassessing individuals who would not, in the ordinary course of events, come up for reassessment. We expect the pathfinder to run for around three months to ensure the processes for identifying and contacting people and taking them through the claim processes are working satisfactorily. Allowing a small number of existing DLA claimants to advance through the reassessment process ahead of full national implementation will enable us to be sure that our approach to engaging these customers into the claims process is working effectively ahead of widening the selection. Also very relevant here is the independent review and report on the assessment that we are legislating for in Clause 87."

-So basically, PIP will be trialled, on a small number of new claimants. Then all new claims, with a commitment to review at every stage. Only if everything is working will existing claims begin the process and that, 6 months later.

-He went on to promise two independent reviews, at 2 years and 4 years with a third promised if any concerns are expressed at year 4. He stressed that this is a "Firm commitment from me and my ministerial colleagues"

He concludes by saying "In reality, in the way that we are structuring this, we are trialling it in any real sense; we are doing it on a gradual basis. If we do it in this way, we will get the assessment and wider benefit processes right; we will involve disabled people and we will learn from the earlier delivery of the benefit."

So, what does all that mean? It means the Government had to make very considerable compromises to avoid another embarrassing defeat. Are they significant enough for us? Of course not. Would they ever have been? Of course not. Were we ever going to stop PIP 12 days before the vote? Never. Do we trust this government to listen properly this time? Why would we?

But, Freud and ministers are accountable for every promise they made. If they renege on even one, we can challenge it.

Crucially we were heard, not just by nervous ministers, but by the public. There is now real disquiet over plans to cut DLA for 500,000 disabled people. The atrocious arrogance we have seen for so long from politicians, simply must be tempered from now on. We shone a spotlight on these reforms and now they must be implemented in full view.

Does it matter that they "won" the vote or does it matter that we made PIP safer for millions? That any details or changes must be agreed by the Commons and the Lords? Did we want the PR coup or did we want concessions?

I wanted concessions, any concessions, but I never thought we would get them.

Peers got hundreds of letters and emails. The pressure you put on Government was truly extraordinary and make no mistake, this is a Government unwilling to shift on even the smallest details. I have never seen ordinary people - not politicians or think tanks - ordinary people, affect actual democratic change in the way I saw last night. Never.

And the peers - what of them? Well, just days before a vote, they heard our requests, tabled an amendment and fought. For us. It was a stronger amendment than any before it. It focused on us, on disabled people and what we needed to start to trust any process affecting us. They fought passionately for an amendment it would be very hard to win. That in itself is significant in a world of political positioning.

Perhaps one of the most significant statements came from Lord MacKenzie, Labour Lord

"I have some responsibility for having introduced the employment and support allowance so I cannot claim any such accolade. It is clear that the assessment process has not been working and has caused... distress to too many disabled people"

As an unexpected bonus, Labour finally taking ownership for the failures of ESA is a step forward.

Finally, how did the vote go?

Not Contents 229 - Tories 150, LibDems 65, crossbench 13, Other 1

Contents 213 - Labour 160, LibDems 2, crossbench 39, other 12

There is no easy way to say that those figures are brutal. We won the crossbenchers by 3 to 1. We won the argument. On evidence, politically impartial peers voted for a pause to PIP. Lib Dems did not. (With the notable exceptions of Bns Tonge and Bns Doocey ) Even the Tories did not turn out in numbers to match Labour. But the LibDems were whipped - told how to vote - so we could never have won. Did they make Freud shift so far in exchange for a win that would save the Government embarrassment? It doesn't really matter. They signed away the Disability Living Allowance. I hope they sleep well.

When I took on the Spartacus Report, I hoped that in some small way it might put pressure on the Government. That somehow, it might make people think. I never in a million years thought it would result in real changes to the plans for PIP. It did, and every last one of us should sit back in amazement and really take in what we did. We embarrassed the Government. We embarrassed them so much, they would certainly have lost yesterday if they hadn't moved significantly. We won three amendments to ESA. We changed the structure and implementation of PIP. We had just seven hours to publicise an amendment and ask peers to vote on it. With ESA we had 15 months. Nonetheless, the Government still only won by the narrowest of margins, a mere 16 votes.

Tuesday, 17 January 2012

(For a second may I digress? It was utterly beautiful. For a big fan of history, a politics geek and art lover, it was almost too much stimulation at once. I sat on a bench!! Hopefully archaic looking guards with big swords aren't on their way to cut off my head for that?)

Anyway, back to terribly grown up, sensible stuff.

I went to meet "The Amendment Lords" (7 yr old asked if they were Jedis and what colour light sabres they had.)

With a clutch of emails of support from charities and groups and of course, every one of you there with me in spirit, I explained why we felt there had to be a pause to PIP.

-I explained how worried we were that legislation would pass with so few details decided. I said we had lost trust in politicians to act with transparency - and even integrity. Leaving so much in their hands to decide under secondary legislation, later, means we don't actually know how the law they are passing will affect our lives. Or the lives of our carers.

-They asked me what the single biggest concern was. I hope you agree that I suggested it was fear over another ESA style mess. I argued that unless assessments were designed by disabled people and took all medical evidence into account, they would just add to the disaster we already face with WCAs (the assessments used to decide Employment and Support Allowance)

I suggested that in any case, the ESA assessment process was already creaking under the strain of the sheer numbers of people the DWP want assessed. In my opinion, the DWP would find it impossible to train enough extra people to assess 3.2 million DLA claimants anyway. I suggested a paper assessment as a first stage, and only once all medical and social evidence had been considered should an assessor decide whether or not to conduct a face to face assessment.

Most importantly, I begged them not to roll this out until we could make sure we had a policy that would work.

ESA is a three year experiment using real people as guinea pigs. The DWP admitted there were serious problems with it, yet maintained it was better to modify the ongoing process rather than pause it while they got it right. That means that every day, for three years, vulnerable people have been let down, denied support they need and been forced through stressful appeals. While we wait for Harrington to decide our futures, every day, people are suffering.

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

We have just 7 hours to make sure that as many peers know about it as possible. To show them that it has a coalition of support difficult to ignore. Charities, politicians and journalists are all ready with statements and letters and articles. TV interviews are lined up all day. We have done all we possibly can to make sure that if the Lords decided to table an amendment expressing our concerns, we would be able to tell peers about it.

The reform of DLA will cost £675 million. Half a million disabled people will lose support. We have made a very strong case in our report, Responsible Reform, arguing that ill conceived reform will simply end up costing the taxpayer hundreds of millions more in costly appeals and further strain on NHS and social care budgets.

Please, write emails, tweet, contact journalists, blog, plead and persuade. Use evidence, tell them how it will affect you, urge peers to attend the debate and vote for amendment 50E.

We MUST get this right. Lives and futures depend on it. The lives of those very same "vulnerable" people the Government have pledged so publicly to protect and support.

We are just asking for reform to be safe. At the very least, surely that is not too much to ask?

Monday, 16 January 2012

What an amazing, incredible week. Today, Lord Freud, the sponsor of the welfare reform bill in the Lords had to write a letter to peers answering our report!! I never, in a million years, thought I would write that sentence.

Tomorrow, I have possibly the most exciting news yet - I bet you can't believe it's even possible can you? But it is. The momentum has knocked me sideways - I'm humbled by the response from every corner of the web, from journalists, from unions, from politicians from charities, flooding in to my inbox so quickly I can't even reply.

And the evidence!! I have been sent emails and FOIs and links from everywhere - it feels like I'm watching the Government's plans for welfare reform crumble before my eyes!

My life has disappeared. I haven't had a "normal" day for about two months. I haven't washed up, I haven't cooked, I haven't spent any time with my astonishing and supportive family and kids. My 89 year old Dad has been ill in hospital but refused to let me stop doing this. I've been so ill, I have barely known my own name.

But I've done it with delight. I've done it with such enormous pleasure and wonder. Can you imagine a phone call from Newsnight? Or a chance to go against Miller? Or a chance to answer Lord Freud, in public?? How could I ever not do any of those things? I'd never forgive myself. It's worth having no clean clothes, a kitchen full of takeaway boxes and absolutely no control over any minute of any day. I feel rubbish all the time anyway, I might as well feel rubbish and excited.

But there is a bit of a flaw in the plan. We planned everything to the last detail, but we never expected to get this chance to actually be heard. We always thought the report was about putting our case - we never expected anyone to listen. After all, very few listened before, did they? So why would it change?

And now, I need to know what you want me to do next? I raised funds to put out a report, but in the last few days I had to use money to get to London, to lobby, to get taxis, to pay the £120 extra phone bill I built up.

Tomorrow, I might have the chance to go on a news programme - just two weeks ago I would never have thought it possible, and I'm learning fast, that these things don't always come off - but if I do, what will I do with my kids? I've already used up all of my favour bank about three times. What will we eat? I don't have any money, and I don't have permission to use yours!!

What should we do?? I'm prepared to keep doing this - I want nothing more than to make a case against these reforms on a platform that will be heard - but how do we fund it? Obviously a lot of news channels and papers pay for expenses, but I have to pay to get to meetings. (I am an epic blagger mind you ;)

I need to get my house straight - my family are beyond wonderful, but really, this is taking the.....

I hate this bit, but the truth is we have no money. We're in debt :( I started to go through my account yesterday to see what I needed to add to the expenses list and I was shocked to find I'd spent £550 from my own account! Just on convenient food when I'm too busy to cook for the kids, on petrol, on printer ink, on phone calls. Embarrassingly, I don't have it.

I don't know what to do! In the middle of such chaos it seems awkward to mention that there are practicalities, but if I don't write this now, I'll be spending your money - and increasingly mine - getting more in debt and I don't even know if you want me to!!

So please, just leave comments below and tell me what you think we can do. I have no idea where I stand any more on donations - this was about printing and distributing the report. Advice and suggestions would be good.

Do we carry on with the fund? Is there any other way of doing this?

It might all fizzle out after tomorrow and the DLA votes. If so, I'll come home, go to bed and sleep until Spring. But if not... What then?

To be utterly clear, I'm happy - honoured even - to do this. But I have to make it as easy for my family and my health as possible.

Today, Lord Freud has written to peers with a response to the Responsible Reform (Spartacus) report. This is the full letter, and our response to his claims :

16th January 2012

Dear Colleague.

I understand that you may have received a report recently entitled 'Responsible Reform' by Dr S J Campbell and other disability representatives. I believe this report grossly misrepresents the way the DWP has been conducting disability reform thus far, and I would like to briefly explain how the report's criticisms are misplaced and misleading. The reform of DLA is long overdue, and I am determined to improve the system of state support for disabled people and have made it a personal priority that this is achieved in an open, consultative manner.

I think we all agree that the reform of DLA is overdue, we just disagree that PIP is the right reform

Responsible Reform suggests that the consultation period, following the publication of the 'Disability Living Allowance reform' consultation document, was insufficient. The Government's Code of Practice on Consultation recommends a minimum 12-week consultation period for public consultations, unless there are good reasons for a limited consultation period. The formal public consultation on DLA reform ran from 6 December 2010 and closed on 18 February 2011. While we fully aspire to the code's recommendations, we felt a 10 week period was adequate, given that the consultation was limited to general principles only, was preceded by extensive engagement with a wide range of stakeholders and disabled people and will be followed by further extensive consultation on the detailed proposals.

The consultation asked specific questions that would affect the lives of disabled people, it was not "limited to general principles only." This letter does not explain in any way why the consultation period was shorter than recommended under the Code of Practise on Consultation. If anything, respondents felt the period should have been longer than 12 weeks as a "reasonable adjustment" to those disabled people who needed extra help or support to participate.

As outlined in the 'Disability Living Allowance Reform' public consultation document, the Welfare Reform Bill sets out the high-level legal framework of powers underpinning the new benefit. The detailed requirements will be set out in secondary legislation. I am committed to further consult on how we use these powers, and it is my intention to consult fully on the secondary legislation where the rules for Personal Independence Payment will be different to those currently applying to Disability Living Allowance. This consultation will build on the earlier one.

As the previous consultation took no account whatever of the opinions of sick and disabled respondents, we have no reason to believe that future ones will be any more transparent. We remain very concerned that legislations will be passed without these "detailed requirements" and call for a pause to PIP until it is clear exactly how it will affects us.

Responsible Reform further suggests that we did not take into account responses we received to that first consultation. I completely reject this. Can I make it clear; this report has only considered 10% of the responses we received and only those from organisations. All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes.

The Government received 5,500 responses to the consultation. Of these :

500 were from groups representing millions of sick and disabled people throughout the UK.

2,500 were template letters. We reject the idea that people sent template letters to the Government just to congratulate them and argue that these will almost certainly show some concern over the proposals in 100% of cases.

Given the overwhelming opposition to the plans for PIP expressed by the 523 groups who responded (national charities, local authorities, local charities and disabled people's organisations) representing millions of disabled members, it would be remarkable if the 2,500 individual responses were entirely in support. However, we have put in a further FOI request for all 5,000 of the remaining responses - information that we would anyway, expect Lord Freud to make public in support of Lord Freud's claim that "All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes."

The reform process for DLA/PIP remains open, consultative and with a real focus on co-production at all key stages. We have worked with disabled people and disability organisations and continue to do so; my Ministerial colleagues, Departmental officials, and I meet with them on a regular basis. We consulted informally with disabled people and disability organisations in advance of the formal public consultation, and we have developed the assessment process for the new benefit with an independent group of specialists in health, social care and disability, as well as some disabled people.

"Meeting" does not confirm co-operation or engagement. In our experience, disabled people and their organisations are increasingly frustrated that their opinions are ignored. In particular, whilst some form of assessment is supported, we can find no support at all for the ESA-style assessment proposed by the Government.

This has not been a passive relationship. The comments, input, advice and guidance has led to changes to both the assessment criteria and the overall policy, most notably that we will not remove the mobility component of both DLA and Personal Independence Payment in residential care homes.

An enormous coalition of disabled people their organisations and major charities are saying that they DO feel this has been a passive process. There are many, many elements of the welfare reform bill that we are all warning will cause real hardship. Removing the mobility component of DLA from those in residential care homes is just one proposal that would have been unworkable and discriminatory. There are many more and the Government have refused to consider alternative proposals. The assessment criteria remain a cause for deep concern across the disabled community and are still far from workable.

The Department has also established the Personal Independence Payment Implementation Development Group, which meets regularly and involves over 50 organisations of and for disabled people. This dialogue is crucial as we design and develop delivery arrangements. The Department has also adopted the principles of user-centred design for Personal Independence Payment that places customers at the heart of the design process to ensure their needs are reflected in the way policies are delivered.

This response does not address any of the serious concerns raised by the Responsible Reform report. (Spartacus Report) That this letter fails to comment on the use of misleading statistics to justify reform, fails to comment on the repeated warnings that proposals for PIP may breach international and UK equality laws, and fails to understand what is leading to the growth in DLA caseloads is of great concern. They still do not explain where or how they decided to cut 20% from the DLA budget or look at the impact that this will have on disabled people.

It is what Lord Freud does NOT address in this letter that we believe ought to give peers the greatest cause for concern.

My Ministerial colleagues and I are personally committed to making Personal Independence Payment an effective, efficient benefit that targets support where it can help those facing the largest challenges in leading an independent life. It is in everybody's interest to make sure that disabled people and their representatives are involved as we design a solution that achieves those goals. I believe my Department has and is taking the right approach to achieve that, and we will continue that open dialogue as we during the implementation period and beyond.

[signed]

"Lord Freud"

Minister for Welfare Reform

Response on behalf of the Responsible Reform report by Sue Marsh and Kaliya Franklin

Sick and disabled people, their charities and organisations do not support the plans, which are based on an ignorance of disability, flawed evidence and will do great harm to millions. The Government are steamrollering the changes through despite growing calls for PIP to be put on hold until the plans can be made safe.

We do not oppose reform of DLA - sick and disabled people want the benefit to be simpler and better targeted. We DO oppose plans that will fail causing millions to suffer. We call on the House of Lords to attend the debates tomorrow and vote for a pause.

This morning, we see desperate attempts at propaganda from the DWP. Once more, we must ignore it, however painful it is. We must ignore the fear that these attacks inspire and make our own case honestly, calmly and clearly. Once more, we must present the British public with evidence and trust that they will not accept this attack on the most vulnerable of all.

They will tell people what DLA is really used for and how it helps us to live as independently as we are able to. All over the internet, people will tell their side of the story and the blog will be updated all day. Please use the hashtag #spartacusstories to tell your own story on twitter or to post links to your own experiences.

Update your statuses on Facebook, calling for a pause to PIP and asking peers to attend the debate tomorrow. Blog, send the links to your local paper, ask friends and family to join in.

We must report our own news, we must be our own advocates.

It is becoming clearer every hour that the Government have no understanding of their own policies. Their arguments are unravelling by the day and no amount of lies or spin will hide us away.

If the best argument the Government can make is "we can't afford it" or "you don't deserve it" then we must just trust the public - and the Lords - to decide for themselves who to listen to. We must hope that they ask who they believe - corrupt, out of touch, ignorant, politicians or the very people they hope to silence and ignore.

I am confident they will hear our stories and reject the arguments of MPs who receive more in food expenses than we must live on for a month.

Sunday, 15 January 2012

Jobs and Welfare

Jobs and Welfare

"The Government believes that we need to encourage responsibility and fairness in the welfare system. That means providing help for those who cannot work, training and targeted support for those looking for work, but sanctions for those who turn down reasonable offers of work or training.

We will end all existing welfare to work programmes and create a single welfare to work programme to help all unemployed people get back into work.

We will ensure that Jobseeker's Allowance claimants facing the most significant barriers to work are referred to the new welfare to work programme immediately.

We will ensure that receipt of benefits for those able to work is conditional on their willingness to work.

We support the National Minimum Wage because of the protection it gives low income workers and the incentives to work it provides.

We will re-assess all current claimants of Incapacity Benefit for their readiness to work.

We will support would-be entrepreneurs through a new programme - Work for Yourself - which will give the unemployed access to business mentors and start-up loans.

We will develop local Work Clubs - places where unemployed people can gather to exchange skills, find opportunities, make contacts and provide mutual support.

We will investigate how to simplify the benefit system in order to improve incentives to work.

Social Care and Disability

The Government believes that people needing care deserve to be treated with dignity and respect. We understand the urgency of reforming the system of social care to provide much more control to individuals and their carers, and to ease the cost burden that they and their families face.

We will establish a commission on long-term care, to report within a year. The commission will consider a range of ideas, including both a voluntary insurance scheme to protect the assets of those who go into residential care, and a partnership scheme as proposed by Derek Wanless.

We will break down barriers between health and social care funding to incentivise preventative action.

We will extend the greater roll-out of personal budgets to give people and their carers more control and purchasing power.

We will reform Access to Work, so disabled people can apply for jobs with funding already secured for any adaptations and equipment they will need."

Quite apart from the appalling betrayal of carers highlighted in this afterthought of a manifesto entry, does anyone notice anything? Anything huge they forgot to mention?

Oh yes, silly them. Not a peep about scrapping DLA and replacing it with PIP. Well, except this of course :

“Conservatives have pledged to preserve Disability Living Allowance and Attendance Allowance as cash benefits.”

I think that in a fuzzy, undefined way, most of them think the cuts will mainly come from dole scroungers, healthy cheats "on the sick", cutting extortionately high housing benefit enabling massive immigrant families to live in mansions in Mayfair and mopping up the rest, the catch all conscience salve of "efficiency savings."

We're talking about at least £83 Billions of cuts. I'm sure most of us don't have a clue about how much money £83 Billions actually is - well it's eye watering. If you believe a single word I write, then believe me, it's not coming from "efficiency savings" and a few scroungers. Remember, tax rises on top of this £83 Billions (mainly VAT) will only account for around £20 Billions. (Only!)

Of course, I am most passionate about cuts to disability and sickness benefits. So often, this group can't answer back, (literally) can't physically march endlessly up and down Whitehall, and they don't have the financial alternatives to benefits that healthy people do. I know it's easy to turn a blind eye, (no pun intended) or believe the oh-so-smooth Mr Cameron when he assures you that the "poorest and most vulnerable" will be protected, but it's just not true, and my Conservative, Lib Dem and Labour friends are united in their belief that this section of society are being scapegoated, let down and abandoned in a way that is truly sickening.

This post won't be short and snappy. It might be a little detailed and specialist, but if you read it all, you'll find a litany of cuts that will make the world an impossible place for many of the most physically and mentally disabled in our society. I don't want to live in this cruel place and whatever your political persuasion, I think you'll agree. Get a cup of tea, find a quiet half hour, and please, please read this.

** ** ** ** ** ** ** ** ** **
Sarah and Keith are in their forties. They have two children, Oliver and Ruby. Oliver is 11 and Ruby is 9. Sarah used to be a Paralegal, but she developed MS 6 years ago. Keith was a Fireman. Oliver was born with severe physical and learning disabilities and is largely dependent for his care needs.

Keith had to first come to terms with his son's profound disability. Then he was dealt the double blow of finding that his wife too, had a progressive, degenerative illness that would shorten her life and slowly take her away from him. He faced a choice : Give up work and look after his family, or see his son and eventually his wife, go into care.

He gave up work and the family became completely dependent on the state for their housing needs, income to buy food and pay bills, care needs for Sarah and Oliver, and transport costs. Nonetheless, Keith undoubtedly saves the state thousands of pounds every month. The cost of pemanent residential care for Oliver would be massive and it will not be long before Sarah would also need full time, residential care. Keith does all of this, largely alone, with just the occasional support of a local hospice for Oliver, that provides a few hours respite care once a week. Oliver does go to a special school and with his modified transport provided through DLA, Keith's dream, is that, with state assistance and Keith's ever constant support, one day, he will be able to live independently, and manage some kind of fulfilling work.

After a year or so, when their lives had somehow settled into the new, (previously unimaginable) routine, Sarah found that claiming Disability Living Allowance (DLA) meant that she could in fact, still work part time as a paralegal. The higher rate mobility allowed her to pay for transport to and from her office and her small firm of lawyers applied for an "Access to Work" grant which meant that they could install a ramp and a special desk to enable Sarah to actually enter the building to do her job.

Today however, Sarah has become too ill to work. Her speech is slurred, she needs help feeding herself, dressing, and she uses a special chair to allow her some mobility. Now that she can no longer work, she has to claim the ridiculously entitled Employment Support Allowance (ESA).

Ruby is a young carer too. Unpaid and unrecognised, she reads to her Mum and brother, makes them meals and drinks and takes on many other small tasks to help her Dad.

Keith suffers from intermittent depression when the stark reality of his situation becomes too much to bear. However, he has no choice but to carry on, daily trudging through the enormously repetitive and physically demanding job of caring for two severely disabled loved-ones. There are regular hospital stays to deal with, Consultant's appointments, costly prescription charges for Sarah, 40 page plus forms to fill in for every bit of help - for DLA for ESA, for modifications to their home (though Keith does as many as he can himself if he can every find an hour or so).

Sarah has to be "assessed" every few years to keep her financial support. Incredibly, the private American firm ATOS, used to "assess" ESA claimants, placed Sarah in the Work Capability Assessment Group, meaning that she was considered by their non-medically trained assessors to be capable of doing some kind of work. (Only 6% of claimants are now being found entitled to long term support under ATOS's assessments. ( http://diaryofabenefitscrounger.blogspot.com/2010/11/compass-report-into-esa-assessments.html)

Oliver is regularly rushed to hospital by ambulance, his life in the balance, but so far, the incredible local children's ward have saved both his life and his fiercely nurtured dignity.

** ** ** ** ** ** ** ** ** **

Since May, the family have first been concerned, then astounded, then terrified and now desperate as they've heard the endless drip-drip of announcements from the new coalition government.

Their benefits are to be capped at £26,000, with only Sarah and Oliver's DLA payments excluded. They will almost certainly have to move, as from now on, their home needs will be assessed on the cheapest 30% of available housing. A local charity had raised thousands to install a special "Sensory room" for Oliver with lights and shapes and colours that help to stimulate his educational development. They will probably have to leave it all behind as the new home will need to be smaller.

Sarah was due to appeal the decision made by ATOS that she was capable of work, (40% of assessments were going to appeal with evidence from CAB that around 70% of appeals were being upheld with representation http://www.cas.org.uk/news/2010/may/call-to-end-misery-and-hardship-for-sick-and-disabled ) but legal aid has been slashed and she will no longer qualify. The government are also talking about limiting the right to certain tribunals anyway, so it's unlikely Keith can even represent her himself..

Oliver will never have the option to live independently now, as the Independent Living Fund is to be scrapped. http://www.scope.org.uk/news/independent-living-fund-comment This would have topped up his care by, perhaps £300 or £400 a month, meaning that with Keith's help, he could have lived in accommodation with only limited assistance. Going into permanent residential care would cost the state many times more and another cut announced, is that Oliver would no longer be entitled to mobility assistance in residential care. http://www.touchstoneblog.org.uk/2010/10/dla-and-residential-homes-a-nastier-cut-than-you-may-think/ He would lose the tiny bit of independence this afforded him and be stuck staring at four walls, unable to get out. Anyway, Keith can't bear it, so will probably just carry on caring for him at home until he's too old or frail himself.

The next time Oliver needs to stay in hospital, the family will lose his DLA. All the extra costs of car parking, extra care for Sarah while Keith is at the hospital with their son, accommodation for overnight stays, will now have to be found from somewhere. The last time he was admitted, there were only 4 trained nurses for every 28 patients instead of the usual 8. The hospital is even talking about closing the ward altogether because of the "efficiency savings" they are expected to make, (which are actually stealth cuts). This means Oliver will have to go to the larger hospital 34 miles away, where he knows no-one and Keith will incur even more costs visiting and transporting him.

In fact, even DLA is to be abolished, replaced with Personal Independence Payments.http://disabledpeopleprotest.wordpress.com/2010/12/06/dla-to-be-replaced-by-pip-from-201314/ First the government said they would need to cut around 20% of claimants altogether, recently the figure of 25% was suggested. As Sarah is only in the Work Capability group, it's unbelievable, but likely that she could be one of the 25%. They live in fear. If Sarah loses her DLA, they will lose Keith's Carers and Attendance allowance too.

Because local government faces cuts of over 7%, the council have cut £200,000 of funding to Oliver's hospice that Keith so relies on for a few hours respite. They have no choice but to close now, leaving the most disabled local children without this incredible resource that helps to develop them into adults who can play some role in society.

Keith and Sarah have looked at Keith returning to work, but it would mean most of their benefits would be cut, Oliver would have to go into care, and Sarah would simply have to wait for Keith to be off shift to get any care herself. Besides, Fire fighters are being cut too, so it's unlikely there would be work for him anyway.http://www.nhsonline.net/news/article.asp?CategoryId=37&ArticleId=4631

George Osborne announced in his Comprehensive Spending Review that for those on ESA in the Work Capability Group who have working partners, the benefit is now to be time limited to one year. (retrospectively) http://www.disabilityalliance.org/esacut.htm This means that Sarah would no longer have any personal income at all, despite contributing tax and NI for years as a paralegal. Ironically, this particular cut makes it impossible for Keith ever to return to work again.

The family is under so much stress, that Ruby is frightened to go to school, in case her home has been taken away when she gets back. Sarah has considered committing suicide to ease Keith's burden and Keith cries himself to sleep when he thinks no-one can hear him.

It is entirely possible they might end up destitute or even homeless.

Will you help? Will you stop this? Is it really credible that families like Keith, Sarah, Ruby and Oliver carry the burden of our financial woes while RBS give Hester a 2.5 million bonus?

The dearly fought principles of equality and human rights for all, basic rights to dignity and a life as fulfilling as it is possible to live are being ripped away. The logical conslusion of these cuts are unthinkable. Please, please, don't let them happen.

** The family above are an example of real life stories. Names have been changed.

With huge thanks to Rabbi Debbie Young-Somers of the West London Synagogue of British Jews in Central London for allowing us to reproduce yesterday's sermon in full. And Mazel tov to Maya!

Hearing the voice of Moses

Maya mentioned in her dvar torah that she has special needs –though I would argue her sense of an inability to sing is only a disability if Maya believes it is! It’s often said that we in fact all have special needs of one sort or another, we are just affected by them in different ways. Our limitations are often placed on us by the world we live in, but it is not uncommon for us to place limitations on ourselves, through our own fear and doubt. Moses demonstrates this perfectly in this weeks Torah portion, trying to convince God (not just his parents or a teacher) that he really can’t do the task he has been called to. He has a speech impediment, which midrash tells us was caused when Moses had placed hot coals in his mouth as a child[1]. But we can learn a huge amount from Shemot about supporting those who may need more support to achieve their full potential than others. If we are all given the right encouragement and guidelines, and perhaps more importantly resources, just as Moses is by God, we can overcome much that life has thrown at us.

And of course it isn’t just this week’s portion which tells us of the Jewish imperative to support the vulnerable in our society, there’s the obvious quote from Leviticus: “You shall not insult the deaf or place a stumbling block before the blind” (19:14). But there are other imperatives too; one of my favourites comes from Isaiah (56:5) talking about the Temple: “For my house shall be a house of prayer for allpeople”. We need to not just enable, but ensure our houses of worship, and the world around us, is open to all, not just those we see.

In starting to think about these issues I sent a twitter message on Thursday to a tweeter known as @BendyGirl who I follow and have learnt a huge amount from. She suffers from a condition called Ehlers Danlos Syndrome and blogs, in her words “about the highs & lows of life lived with joints that dislocate as frequently as the British weather changes”. To leave the house she needs an electric wheelchair, however to qualify for one on the NHS you have to be wheelchair bound in your own home for 6 months. At home it is good for her health to move as much as possible, so in walking at home, she is precluding her opportunity to leave the house. She was incredibly helpful and suggested in response to my unsolicited online message that I just give her a call. Which I did.

It is clear that our responsibility, Jewish or otherwise, to support the vulnerable in our society is not going well. You might even be surprised to know that members of our own congregation are struggling through the benefits system, and despite already living hand to mouth, are facing cuts in Disability Living Allowance and Employment and support allowance. Proving you need the benefits is becoming harder and harder, with those who are wheelchair bound, likely in the new benefits which will replace the DLA to be qualified as able to work as well as you or me, as long as they can propel the chair themselves.

We all know cuts and savings need to be found, and it’s important to note this is not a coalition problem, these cuts began to be made under the previous government. But I was struck by something BendyGirl (whose real name is Kaliya) made. In Nazi Germany, well before there were Jewish pogroms and camps, disabled and mentally ill German citizens were rounded up, and it was for them that camps were initially developed. And how were the rest of the population convinced this was ok? They were told that these people were an economic drain on the nation. Increasingly, as Kaliya sees it, our media has been spearheading a campaign to convince us that the disabled are work shy benefit cheats. In the last 18 months campaigners have noticed a significant increase in hate crimes towards the disabled, and they are no longer referred to as ‘spaz’ when attacked, but as ‘benefit scrounging scum’. In fact, only half a percent of all disability claimants have been found to be fraudulent, and yet to combat these false claims, benefits are being cut by, at the most optimistic estimate, 20%. Deuteronomy (15:7) says “If there be among you a needy person, you shall not harden your heart, but you shall surely open your hand”. We need to start hearing not only the encouragement of Deuteronomy, and indeed of today’s portion, but the voice of those like Kaliya, who feel invisible (especially if they don’t have a wheelchair or white stick) and incredibly vulnerable.

Disability campaigners are, on the whole, themselves physically struggling, sick, and isolated. Moses’ inability to express himself clearly is a useful metaphor for this, he had his brother, Aaron, to help him along the way, and he became the greatest leader of the Israelites. With this kind of support, three defeats against the welfare reform bill were achieved this week in the house of Lords (cavod to my senior colleague in the corner). Yet these cuts have been happening for a while, and will continue if more isn’t said and done.

Maya, I know you are an incredible ally and support to your mum, and many in the community are carers and supporters just like you. I have seen and worked with some of you here as you struggled with eviction because benefits couldn’t be processed when they were needed. As a community we have felt the cuts in social care and allowances biting, and have this month been joined in our professional team by a Social Care worker – Jo, who is helping us deal with the sheer volume of work that is coming our way now that social services are not doing their bit, or at least helping us to navigate the incredibly time consuming beurocracy. What I hear from Kaliya, and from many other voices, particularly on the web, where the housebound often have their only outlet, is that people aren’t making enough noise about this. As part of her condition, Kaliya’s larynx had collapsed when we spoke, making the parallel between her and Moses even more stark – she, and so many others, need our voices, so that they can cling onto the meagre benefits they have now. We need to support those that we can, and be the voice for those who can’t raise theirs up loud enough. Even if this doesn’t affect you directly, it is still our responsibility to speak up for others.

And as a community we are also being given the chance to come together to work to change how accessible we are through the Judith Trusts Inclusion Campaign which is working with us to ensure we can reach out and include, and I hope more of you will want to become involved in this training as well.

Mishnah Sanhedrin (4:5) says that humans make coins, all from the same mould, and they all come out the same. God, however, makes humans each from the same mould as the first human, yet each of us is unique. We all have unique skills and abilities, as well as challenges and disabilities. Maya, you confessed to us what you struggle with, but you also demonstrated what you are fantastic at. Everyone wants to contribute, but not everyone can do so in the same way or to the same extent. I hope we can all learn from you about how to be a support and a friend. I must confess, as a sister of someone with special needs, I’m angry at what is potentially being lost both in care and in human dignity, but as a Jew, and as a British citizen, who knows we can do better, I am angrier, and I want us all to lift up our voices, in remembrance of Moses who couldn’t.

A few months ago - again, thanks to FOI requests - we found that the forms we must fill in to apply for ESA (Employment and Support Allowance or "sickness benefit") were not all opened by Atos, the private company in charge of "assessing" our ability to work. Instead, they were being opened in a Royal Mail sorting office and sent on.

These forms contain the most sensitive information imaginable. They are nearly 50 pages long and you must describe every last detail of how your illness or disability affects your life. Often, one shares details that even a partner might not know. Mental health problems with a root in horrific trauma must be explained in black and white. Volume and frequency of incontinence must be listed and every last small failure of independence must be recorded. To learn that this information was seen by anyone but an assessor sent a shock through our community.

The DWP later admitted that "at least 5" assessment centres did not open their own mail.

The Spartacus Report made a nice publicity splash, but very few of the very serious claims it makes have been reported or investigated.

For me, one of the most shocking findings was that the DWP are already using the results of an ESA assessment to reject claims for DLA.

ESA is an out of work benefit paid to those with illnesses or disabilities who cannot work. It is a very modest form of income replacement. DLA, or Disability Living Allowance is a working benefit paid to cover the extra cost of disability - heating, transport aids etc. The two are entirely different and perform entirely different roles. What's more, those entitled to both ESA & DLA tend to be the most profoundly disabled.

As we were researching the Spartacus Report we found proof that the DWP are already using the decision from an ESA assessment to reject a claim for DLA. This:

I've been ill for 28 years. I've spent more time with my surgeon than Katie Price. I've spent months as an in-patient yet I am not even allowed to read my own notes!!!

So fiercely is my medical data protected within the NHS, that I must apply in writing, sending £10 to cover copying costs. I may not even sit on my own in-patient bed and ask to see them. This is true of GPs opinions for benefit claims, for employer requests and for insurance claims.

Yet, if you are the lowest of the low in the eyes of those who design policy, if you are so apparently incapable or poor or useless that you must throw yourself on the mercy of the state - a "claimant" or worse, part of the benefit "stock" as Lord Freud likes to call us - it seems you deserve no such protection.

In the name of proving your worth, you must be prepared for your most intimate personal details to be passed around like a hookah pipe. What's more, you get no say in this and no one feels they have any obligation to inform you.

Now, if ESA assessments worked, this would be, at least, slightly less shocking. But they don't. 40% of rejected claims go to appeal and up to 70% of them are successful. The assessments cannot deal with fluctuating conditions and have been found unfit for purpose by the CAB, the government's own advisory committee, the DWP Work and Pensions Committee and every other independent report conducted. Even the professor who helped to design ESA says it is a chaotic mess.

These assessments are the single biggest issue that disabled people have with ESA. They are designed to exclude many genuine claimants, some people are dying just hours after being found "fit for work" the assessment centres are often inaccessible to wheelchairs (yes, really) and the entire process is farcical. To use this disaster to decide yet another vital support that sick and disabled people rely on is absolutely unforgivable.

We call on the Government to maker an urgent statement on this issue. We ask them how our rights under the data protection act are affected by this sharing of information without our consent or knowledge and whether they are able to lawfully take this step before the welfare reform bill is passed?

Wikio

Gadget

Followers

About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.